My (rubbish) T2 Diagnosis

[saz9961]

A little under 24 hours ago, a GP (I can't call her "my doctor" as its never the same one) told me I had T2 Diabetes (sort of).

Back in April I reported to GPs (well a locum), that I had some concerns about needing to pee more often, and feeling a bit thirsty. Straight away they put me on a 2 week cancer diagnosis pathway, with urethroscopy booked in a couple days after the GP appointment (fast) but the day before flying to India. No other exam was done, GP told me to measure my own BP, they eventually requested a specimen (which came back as "normal", but not specifying what was normal). When away, I got a bit fed up with the whole urethroscopy thing, given there were risks to it, and I didn't think it necessary, until a few other things were discounted, so canceled it, preferring to speak to an actual full time GP at my clinic, and reset, starting with bloods. A Consultant got a bit ticked off with me, cc'ing me in a letter to my GP describing me as "not compliant" which ticked me off. The bloods slipped my mind over the summer. But a crisis, of sorts, and probably related, got them done.

A week ago, I developed a decent sized boil (abscess). A visit to the GP nurse to get antibiotics (and resulting in surgery to get it drained) got me, rightfully, an appointment booked in for the blood sample.

Dealing with the abscess wound, I got a cheerful text from the surgery asking me to set up a phone call with a GP for a ROUTINE discussion (their capitals) in the next 4-6 weeks about the test results. I thought, ah, good news, nothing too serious, maybe highish cholesterol etc.

Then I get a phone request for a F-2-F the next day with a GP, no subject mentioned. I thought this was about extending my antibiotics by another week). Not only that, they then suddenly moved it to earlier in the day.

I visit, wait for 1.5 hours, so it ends up being past the original time. The doctor wanted to talk about about my blood results. I asked about the text; she had no idea, suggesting maybe everything else was normal. But my blood sugar was very high (not sharing the number). She quickly did a finger prick test, had difficulty getting blood from my finger, didn't know how to operate the machine without the leaflet, and didn't understand the displayed number. She wanted also to check my blood ketones, again machine fail, so I provided a speciment with the old fashioned dipstick, which were fine for ketones. Ask me about peeing frequently, yes, dry mouth, yes, passing out? no sickness? No.

The conversation was short, and went sort of like this;

Doc: "Oh you probably have Diabetes"

Me: "Do you mean Type 1 or Type 2"

Doc: "Probably Type 2"

Me: "Oh, there's possibility of remission, right"

Doc: "Yeah, maybe"

Doc: "I won't call it a Diabetes Diagnosis yet because you need a second blood test. Book it in in the next 1-2 weeks"

Me: "Ok"

"Doc: "Bye"

10 minutes later, in my car, I get a rather breathless call from the Doc saying she's changed her mind, and sending a prescription to Tesco to start me on Metformin right away that evening, booked in with Diabetes nurse the next day.

I'm not sure if that is how life changing diagnoses are meant to go. Given my experience of healthcare, its not surprising. Maybe I have it, maybe I don't.

In 2000, I was told I had Asthma, handed a pair of inhalers, and told to be get on with my life. 7 years later, while undergoing gasmask fitting, a MOD doctor told me I never had asthma. Funny that.

Last night, I felt practical. Today, I feel a bit angry. What's the next phase? Reaction from siblings "you've got to look after yourself", ie, its my fault, which is probably the case.

 

[saffron15]

@saz9961 welcome to the forum. I was asked to see a HCP because my cholestral had risen a bit I have an annual blood test as I have high blood pressure. I haven't seen a Doctor about it since 2009. I assumed it was checked for diabetes but have recently discovered I had a diabetes test in 2014 and was not diabetic then. The previous year my toes were a bit numb and subsequently I was peeing more. My head told me diabetes hearts said they are testing me and would have told me. When actually called to surgery they agreed a test having conceded they weren't testing me! My first reading was 69 a big shock. Protocol says they do a second test but as I had symptoms it was obvious to me. This forum has been really helpful. Ive had further blood tests and now on medication but at my surgery it doesn't warrant any GP intervention. I usually ask reception for results. I think I need the NHS app.
Most surgeries will sign you up for a course. Depending on circumstances you may be able to do a remission course. The ineptness certainly makes the message harder to process. I've decided I'm on my own and need to get on with it. I'm trying to eat lowish carb. See the freshwell site but sometimes medicine is prescribed requiring you to up the carbs a bit.
Good luck. Do ask questions.

 

[Felinia]

Hello and welcome
What an appalling experience with the GP! However, I suspect your blood glucose was high, which is why you were then prescribed Metformin. It is the standard first medication for Type 2. First question you should ask the Diabetes Nurse is "What was my HbA1c" - the standard test for diabetes. 41mmol/mol and below is normal, 42mmol/mol - 47mmol/mol is pre diabetic, 48mmol/mol and above is diabetic. Nowadays many GP's give a person the chance to reduce their glucose levels by lifestyle changes, when the number is less than 60mmol/mol. But some go thundering in with medication straight away. Given your previous GP experience, that might be your case, although it is possible your level was above 60.
I suggest you have a look at the Learning Zone for Type 2, to educate yourself. I started with food, then exercise, then the remainder, taking time to absorb everything. Then you can start to ask questions on this Forum. We have thousands of hours experience, not the less than satisfactory few minutes information you received. No question is silly - I probably asked them all myself!!!
If the diagnosis is confirmed, you should be tested regularly, have annual eye and feet tests, and be put forward for a course (ask for it). But the changes you make have to be for life so must be sustainable.

 

[rebrascora]

It sounds like the GP doing the tests has no experience or understanding of diabetes and when the results where seen by someone else, they realised you needed to start medication ASAP. Technically if you have a very high HbA1c result (the blood test used to diagnose diabetes) and symptoms like peeing and thirst, then that is enough to give you a diabetes diagnosis. Many people don't have symptoms, so 2x blood tests over 47mmols/mol are required for a diagnosis, but generally they like to err on the side of caution and do 2 tests anyway. If the first test result is very high which clearly yours was, then they should start you on medication straight away, hence the sudden panic to send a prescription to Tesco for you to collect ASAP and to see the nurse, who hopefully will be far more switched on than the doctor. Often there is a nurse at a GP practice who has received more training in diabetes than GPs do, who are put in charge of managing the diabetic patients at the surgery, so finger crossed your appointment with that nurse was more useful. Do ask for the result of your HbA1c test. You are entitled to the actual numbers and because diabetes is a condition which is generally best self managed, knowing the numbers is important in understanding your current situation and what steps you need to take. Knowledge is power with diabetes.

It really does seem like some one jumped the gun with the suggestion of a urethroscopy and cancer pathway without doing other blood work first and diabetes should probably have been their first thought with those symptoms, since a UTI or diabetes would probably be the most common cause of them.

Unfortunately primary care within the NHS is really breaking down in some places more than others and it sounds like your surgery is struggling. Your 1.5 hour wait for an appointment and the GP not knowing how to do the BG tests and sending you away without medication are all indicative of your surgery being overwhelmed in my opinion. The lack of continuity with doctors is also a big issue that increases the risk of missing a diagnosis earlier. Sadly we get quite a few members joining the forum particularly of late, who have been informed of their diabetes diagnosis via text message.

It is however great that you have come to the forum as there is a wealth of knowledge and practical support to tap into, so do ask away with any questions you have here and we can hopefully steer you in the right direction for the various options you may have.

 

[Leadinglights]

Welcome to the forum, sorry you had the run around re your diagnosis. Given your age checking for prostate issues was probably a good idea.
If you have been prescribed metformin that does suggest your Blood test HbA1C result was a good way over the diagnostic threshold of 48mmol/mol but it is also important to make dietary changes as well.
As mentioned many find the Freshwell program a successful way of reducing blood glucose and losing weight. Have a look at the link https://lowcarbfreshwell.com/
The other thing is to find out what the actual result of the HbA1C is (the actual number) and you should also have foot and eye retinal screening and a repeat HbA1Cin 3 months time to make sure the measures you are taking are being effective. also blood tests for liver and kidney function, and Vit B12, folate and a full blood count would be usual . Don't be fobbed off.

 

[Martin.A]

I can't help wondering whether you saw a GP or one of those Physician Associates we keep hearing about.

 

[helli]

I can't help wondering whether you saw a GP or one of those Physician Associates we keep hearing about.

I have seen a few Physician Associates and find them to be very good. Better than GPs.
The main reason is that they are less arrogant so more likely to look something up if they don't know rather than guessing.
As this is a new qualification, they may also have had training more recently .. especially considering the age of some of my local GPs.

 

[Drummer]

I had high glucose flagged in a test years before diagnosis. They dealt with it by not including the test in subsequent years.
As I take Thyroxine there is an annual check for that and they added in other things.

 

[saz9961]

Meeting with a Diabetes Nurse was a bit better. Feet dry, but they've always been like that. I wear glasses, due a test toon, and always get the full retinal scan anyhow (nothing was flagged at the last one, which was 3 years ago). My wife is Thai, so its hard to get around rice, except as her to serve it to me cold.

Was given a GlucoRx Q glucose meter. Given these are a fiver, I'm not trusting its accuracy, merely for trend analysis (up or down compared to previous). Not too impressed with the first one I was given, because it contained a used lancet in the lancing device. Oops. Told I was going to be put on gliclazide as well, as the Metformin won't be enough to bring the glucose down, and I will be doubling up on the Metformin next month. Questions over why the doctor didn't put both on the prescription.

Passed a scrap of paper with the name of a website to look at (not this one). Surprised there isn't a better set of patient pamphlets prepared. Even a cursory look at this forum shows people using Youtube videos from some dubious self-serving sources to guide them through treatment. But on the otherhand, maybe I am not that surprised.

I'm a PhD in Microbiology, firstly in marine microbiology, but then I was many years in infectious diseases working with various militaries. Now I am a Director of Research, within Medical Devices, for a Plc that essentially provides advice to manufacturers, investors and healthcare provides about technology, disease trends. I got what happened during Covid and after (mostly) right.

 

[Leadinglights]

Meeting with a Diabetes Nurse was a bit better. Feet dry, but they've always been like that. I wear glasses, due a test toon, and always get the full retinal scan anyhow (nothing was flagged at the last one, which was 3 years ago). My wife is Thai, so its hard to get around rice, except as her to serve it to me cold.

Was given a GlucoRx Q glucose meter. Given these are a fiver, I'm not trusting its accuracy, merely for trend analysis (up or down compared to previous). Not too impressed with the first one I was given, because it contained a used lancet in the lancing device. Oops. Told I was going to be put on gliclazide as well, as the Metformin won't be enough to bring the glucose down, and I will be doubling up on the Metformin next month. Questions over why the doctor didn't put both on the prescription.

Passed a scrap of paper with the name of a website to look at (not this one). Surprised there isn't a better set of patient pamphlets prepared. Even a cursory look at this forum shows people using Youtube videos from some dubious self-serving sources to guide them through treatment. But on the otherhand, maybe I am not that surprised.

I'm a PhD in Microbiology, firstly in marine microbiology, but then I was many years in infectious diseases working with various militaries. Now I am a Director of Research, within Medical Devices, for a Plc that essentially provides advice to manufacturers, investors and healthcare provides about technology, disease trends. I got what happened during Covid and after (mostly) right.

I am also a microbiologist and previously worked in education. Your professional background should stand you in good stead at looking critically at information and sifting the wacky from that with good scientific background.
Did you manage to find what the actual result of your HbA1C as that will give you a good idea of how much work you will need to do. It may be that by making suitable dietary changes in combination with metformin will be all that is required.
All monitors have to conform to a certain standard so the monitor you have been given should be satisfactory even though it only cost the GP a fiver, to buy it would be more. I know in a lab setting we are used to instruments costing thousands not just a few pounds. A used lancet in the device was not good practice and they should have known better. We went to single use lancets for safety reasons in the labs to avoid the devices getting covered in blood.
You could do no better than look at the Freshwell link or at the various menu plans on the DUK site.
Rice could be tricky but many have cauliflower rice as an alternative and I use edamame bean noodles or pasta as they are lower carb than wheat based products.

 

[saz9961]

Welcome to the forum, sorry you had the run around re your diagnosis. Given your age checking for prostate issues was probably a good idea.
If you have been prescribed metformin that does suggest your Blood test HbA1C result was a good way over the diagnostic threshold of 48mmol/mol but it is also important to make dietary changes as well.
As mentioned many find the Freshwell program a successful way of reducing blood glucose and losing weight. Have a look at the link https://lowcarbfreshwell.com/
The other thing is to find out what the actual result of the HbA1C is (the actual number) and you should also have foot and eye retinal screening and a repeat HbA1Cin 3 months time to make sure the measures you are taking are being effective. also blood tests for liver and kidney function, and Vit B12, folate and a full blood count would be usual . Don't be fobbed off.

It is very high; 88mmol/mol. Liver function all in normal range, except serum globulin, slightly out of range, but at the time the sample was taken, I had a raging infection. But the infection might have also raised the hBA1 level a bit. I am likely well over the Diabetes threshold. In hospital, my WBC and CRP levels were pretty high, so much the docs were surprised I wasn't screaming in pain.

 

[Leadinglights]

It is very high; 88mmol/mol. Liver function all in normal range, except serum globulin, slightly out of range, but at the time the sample was taken, I had a raging infection. But the infection might have also raised the hBA1 level a bit. I am likely well over the Diabetes threshold. In hospital, my WBC and CRP levels were pretty high, so much the docs were surprised I wasn't screaming in pain.

Yes having an infection may push your HbA1C up a bit but it is still significantly above the threshold. There are many here who have got it down from similar and higher level with just metformin and dietary changes.

 

[everydayupsanddowns]

Welcome to the forum @saz9961

Sorry to hear about your diagnosis, and the way it was handled. Does seem indicative of a primary healthcare system that is overstretched and under-resourced

Glad you have found the forum though. Hopefully your scientific background will help you interpret your evolving BG results, and make some continuing sustainable changes to your menu.

One of the really tricky things about diabetes management is that blood glucose responses to various foods are highly individual, and it can be impossible to say which types and amounts of carbohydrate will ‘spike’ your BG without checking for yourself. Any simply lists of 'good' and 'bad' foods are at best going to be approximate guides based on other people - and your individual responses may be quite different.

Experimentally, you can use a BG meter, taking a reading immediately before eating, and again 2hrs after the first bite, to see what the differences are, and get an idea of the 'meal rise' once your second phase insulin response has been triggered (initially in a way the numbers themselves matter less than the differences between them).

Ideally you would want to see a rise of no more than 2-3mmol/L at the 2hr mark. Once you can see how you respond to different meals you can begin experimenting with reducing portion sizes of the carbs where you see bigger rises (while retaining sufficient to avoid potential hypoglycaemia from the gliclazide). You might find that you are particularly sensitive to carbohydrate from one source (eg bread), but have more liberty with others (eg oats or basmati rice) You might even find that just having things at a different time of day makes a difference - with breakfast time being the trickiest.

Over weeks and months of experimentation you can gradually tweak and tailor your menu to find one that suits your tastebuds, your waistline, your budget and your BG levels - and a way of eating that is flexible enough to be sustainable long-term.

Good luck and keep us posted.

 

[helli]

Welcome @saz9961 and sorry to read of your bad diagnosis experience.
The only thing I would add to the fantastic advice above is take care not to strive for perfection. As an engineer, I too have a scientific background. This leads me to think in absolutes and rules. But diabetes dos not always follow rules. I put it down to a combination of many approximations and unknowns.
For example, the packaging may say each biscuit contains 12.3g carbs. However, one may have more currants than the next. Or you may read that apples contain 14% carbs. But that could vary by variety or ripeness or growing conditions. Then the standards our meters must comply to are to be within 15% accuracy 95% of the time. 15% accuracy can be quite significant, especially when the numbers are higher.
Then when it comes to the unknowns, we can (kind of) measure what we eat but our BG is affected by much more such as stress and illness and exercise and weather and time of the day. It is not as easy to put an accurate number on stress.

So, it is great to come at diabetes with your scientific mind but my advice would be keep a diary of what you eat, how you feel, what exercise you do, etc. to look for trends rather than reacting to one or two numbers. And don't be shocked when diabetes does not behave as your analysis suggests it should - there is probably another variable we missed and beating yourself up about it will not be good for your mental health which will affect your stress which will raise your BG.

Finally, remember to look after all of yourself not just your diabetes.

 

[JimmyBlue]

@saz9961 welcome to what I have found to be a place of information and knowledge on a subject about which until a few weeks ago I knew nothing.

My diagnosis process was certainly better than yours but the fact that the doctors don't seem to want to talk about the diagnosis is a bit weird to me, although my diabetes nurse is a star.

Good luck on your road to remission if that is your target.